Getting to the Central of Person Centered Planning:

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1 1 Getting to the Central of Person Centered Planning: Research on PDD Central s Person Centered Planning Initiative February 2005 Dr. Shelley Kinash Introduction to the Report In 2000, the PDD Central Alberta Community Board endorsed, as part of their Business Plan, an effort to implement a Person Centered Planning approach for all adult individuals with developmental disabilities across Central Alberta. Beginning in 2001, groups in the four communities of Drumheller, Red Deer, Wetaskiwin, and Wainwright were engaged in a pilot process of developing and trying a person centered planning process. In 2004, Miriam Ciarciaglini, Business Plan Project Specialist, initiated a contract with Dr. Shelley Kinash, Faculty with Community Rehabilitation and Disability Studies, University of Calgary, to evaluate the initiative and use the PDD Central experience as a case study to facilitate research on person centered planning. From August through December 2004, Dr. Shelley Kinash and Brittany Harker Martin visited each of the four communities conducting a total of sixty interviews with stakeholders including individuals receiving services, their families and/or guardians, front-line and administrative personnel of PDD funded organizations, natural supports, and others such as a public guardian and PDD personnel. Where consent was given, the interviews were both audio and video recorded. A thirty minute movie DVD has been produced based on this research. It reflects the experience of person centered planning in central Alberta as well as reflections about that experience in the voice of stakeholders. The following is the written final report of the evaluation and research. The report is divided into six sections. It begins by outlining the research. This section serves to introduce the reader to the context of PDD Central s initiative, the methods of the current research and the researchers. The second section defines person centered planning, dreaming and goals largely in the words of the interviewees. The third section depicts the central Alberta experience of person centered planning organized by communities. Some of the illustrative stories among the sixty are chosen for each of Wainwright, Wetaskiwin, Drumheller and Red Deer, in that order. They are included in this order because each community adds progressively more positive features of person centered planning as defined by the literature. In the fourth section, the central region is once again considered as a whole and themes are considered across the communities. The purposes of this inquiry being both to assist PDD Central in striving to continue on in their journey to support people with disabling conditions through person centered planning (evaluation) and to use this experience beyond central Alberta to learn what we can about person centered planning and its implications (research), the fifth section explores research questions such as whether person centered planning has made a

2 2 difference in the achievement of socially valued roles and meaningful relationships in the community. Finally, the sixth section provides detailed recommendations to the PDD Central Alberta Community Board and service providers they fund. Outline of Research Project Background Person centered planning evolved as a way of fundamentally redesigning the nature of the supports for individuals with developmental disabilities. For many years, decision-making, power, and overall authority about individuals lives was located primarily in the hierarchy of the services established to support those very individuals. Over the years, many people worked hard to conceptualize other ways of working with individuals in ways that ensured that those individuals were supported to create their own lives in the ways that they wanted. During the 1990 s person centered planning emerged as a key way of ensuring individuals were supported in the ways they wanted. In 2000, the PDD Central Alberta Community Board endorsed, as part of their Business Plan, an effort to implement a Person centered planning approach for all adult individuals with developmental disabilities across central Alberta. Work began with a review of the existing literature; assembly of the known planning models and work to consolidate an approach that was flexible yet contained the core elements needed for success. During the period, groups in four communities were engaged in a pilot process of developing and trying a person centered planning process. In late 2003, the pilot phase was ending and evaluations were in. Many individuals and families were seeing very practical and tangible benefits emerging from the person centered planning approach. After a one-year pilot phase and another ten month further development/implementation phase, there was a desire to conduct research as to the effectiveness, efficacy and impact of this approach for individuals. There was also a need to determine what suggested improvements are necessary and how to proceed with those improvements. Research Purposes The identified purposes of the research project were to: describe and understand the impact of person centered planning on individuals lives; evaluate the degree, risk or extent to which person centered planning is or isn t being systematized and what might be done to ensure that the person centered planning approach remains individualized; describe and understand the impact of person centered planning to date on service organizations; share the experiences of individuals in central region who have experienced the impact of person centered planning; and provide formal experience for individuals with developmental disabilities as researchers. Project Outputs and Outcomes The project outputs and outcomes as contracted with the Central Alberta Community Board from August 2004 through February 2005 were to: conduct fifty interviews with individuals, family members, employers, staff, advocates, and leaders;

3 3 provide recommendations on the prevention of the systematization of person centered planning; identify the major trends and issues of person centered planning; develop a digital video to assist in sharing the results of the research by December 2004; present research results in January 2005 to communities in central region; submit at least one journal paper to a peer-reviewed journal such as Research and Practice for Persons with Severe Disabilities; submit at least one proposal in response to a Call for Papers for a major field-related conference such as TASH or AAMR; and present one session at the Alberta Association of Rehabilitation Centre s 2005 Conference on Leadership. Beyond what was contracted, sixty interviews were conducted. The Call for Papers was accepted by TASH, and in November 2004, Dr. Shelley Kinash and Brittany Harker Martin presented a paper and the movie DVD in Reno, Nevada. The Research Process Information meetings were held in Red Deer, Alberta with personnel of employed by PDD Central, and with service providers throughout the central region. Dates (one set per month) were scheduled for each of the four pilot sites Wainwright, Wetaskiwin, Drumheller, and Red Deer. Interview schedules were distributed to a volunteer coordinator from each community. One hour was scheduled for each interview. The schedule was arranged such that there were timeslots designated for individuals receiving services, families, staff (with a note to include both front-line and administrative), natural supports, and other. One month prior to the first set of interviews, an interview guide with sample questions was drafted. Using the interview guide as a basis for conversation, a meeting was held with Dr. Kathleen Biersdorff. Dr. Biersdorff took the interview guide to a meeting with self-advocates, who interpreted the questions into plain language, as well as edited the content, and added additional questions based on information they would like to know about person centered planning. Based on these questions specifically for individuals with developmental disabilities supported by PDD funded organizations, interview guides were developed for each of the other stakeholder categories family members and/or guardians, service provider personnel, natural supports, and others. Interactive Interviews Throughout the literature (Berg, 1995; Marshall & Rossman, 1989; Merriam, 1998; Neuman, 1997) interviews typically fall into the qualitative research field and are most commonly defined as conversations with the purpose of gathering information. Berg used a dramaturgical metaphor for depicting the research interview, framing it in terms of an encounter, or a face-to-face interactive social performance (p. 30). The interview is like a play in that the participants adopt the roles of interviewer and interviewee and these roles have shared social meanings and unspoken rules. Further, the content of the interview reflects reality, but is like the script of the play in that the lines do not happen spontaneously in the midst of action. Distinguishing qualitative interviews from natural conversation, Berg asserted that the research interview is not a natural communication exchange (p. 43). He used the example of the way in which participants in natural conversation develop avoidance strategies and send cues usually respected by the others in the dialogue. However, within research, the interviewer must encourage open communication and discourage such avoidance. For example, when I asked one of the self-advocates to tell me about your person centered planning meeting, she asked,

4 4 why. Her body language registered blockage with her arms crossed and her mouth set. I needed this information for the research, so I laughed collegially, and lightly said, cause that s why I m here. Berg simplified some of the complexities of conducting interviews into ten commandments. Never begin an interview cold; remember your purpose; present a natural front; demonstrate aware hearing; think about appearance; interview in a comfortable place; don t be satisfied with monosyllabic answers; be respectful; practice, practice, and practice some more; and be cordial and appreciative. (p. 57,58) While questions and/or topics are pre-established, the interviewer has flexibility in being able to add, delete, or rework both topical ideas and questions, allowing the interviewer to explore the living stage. Although the interview guides were developed and fully reviewed so that no thematic areas were missed, they were laid aside during the interviews so that the conversations could follow the lead of the interviewees. They were welcomed to discuss whatever they felt pertinent to person centered planning. Within this research, interviews lasted between a half hour and an hour-and-a-half in duration. They were loosely structured by the following themes: whether and how person centered planning was experienced; how the plan was recorded; who has a copy; what was liked; what should be changed; how person centered planning differs from previous planning; whether person centered planning makes a difference; typical days now and before; choice, independence and empowerment. The research was well informed by representation from each of the four communities. One trip for the purpose of interviewing took place to each of Wainwright, Drumheller, and Red Deer. Two trips were required to obtain adequate representation from Wetaskiwin due to a human service fundraising event taking place at the time of the first visit. Each of the stakeholder groups was adequately represented including persons receiving services, family members and/or guardians, front-line staff, administrative staff and others such as a public guardian and PDD administration. The only underrepresented group in the research were natural supports. There were only two natural supports included in the research. This may in part be interpreted as a reflection of the deficiency of meaningful community relationships (outside of relationships between persons in client roles with paid staff), as the research reveals that despite the person centered planning initiative people are largely still in traditional services rather than engaged in socially valued roles in community. However, for those who are engaged in meaningful community relationships, unwillingness to bring these persons into a research project affiliated with a disability funding organization may be in an attempt to protect and sustain these relationships. Three comments from interviewees indicated this possibility. You don t want to make a natural support an unnatural support by dragging them into the process. How do we get natural resources to be accountable and to commit to being a natural resource that provides support without making it a system like what we are so used to working in? I think some of the natural supports that are happening well, don t want to be highlighted because they think that s such a natural relationship, they don t understand what the big deal it is. In other words, people in such relationships might resist an invitation to come in to for a research interview, perceiving that their comments are irrelevant, because they do not recognize the importance of ordinary life for persons with disabling conditions.

5 5 Rationale for Videography The interviews were simultaneously conducted and videotaped by the researcher. A videographer was not used to maintain confidentiality and so that the trust relationship was easier to build between the interviewer and interviewee. Without a videographer, the video camera was not made salient and was more easily forgotten as the conversation progressed. A tripod was used. The interviews were videotaped for four reasons. First, planned redundancy of communication modes facilitates accessible information. Burgstahler (2002) defined universal design as the design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design (p. 1). Negroponte (1995) explained the producing information in bits (e.g. digital video) rather than atoms (transcribed tapes) allows the user to pull the information in the desired format, rather than the producer pushing it in a medium that may not be functional. Within his sixteen tips for online learning, Coombs (2000) advised designers to build-in multiple communication modes. Capturing the interviews in a digital format facilitated production such that the research information may be accessed via speech, image with closed captioning, text-only and a combination, thus making it accessible to all user including those who are blind or deaf. Second, infusing the technology into the research context facilitated a research product that was more likely to interest, intrigue and engage. Gladstone (Personal Communication, March 7, 2003) commented that researchers are beginning to study the low frequency with which academic publications are actually read. With the publication expectations of academics and the World Wide Web further contributing to the overwhelming proliferation of print resources, video presentation might position this research product as unique, and thus increase the chances that the knowledge will be shared. Third, video technologies provide a means of demonstration. Mayer (2001) wrote that learners demonstrate better retention and transfer when lessons are presented in words and pictures. Within this research, one of the self-advocates talked about his distaste for the practice of being questioned in accordance with the pre-established categories of a form and then his responses being recorded as if his life could be divided into boxes. His comments are so much more memorable when shown with the video editing effect of the screen dividing into boxes and then the self-advocate s face breaking away into small boxes like a children s puzzle game. It was also helpful to see people s scrapbooks as they were describing them to understand how they might inform their plans. Fourth, videotaping the interviews allowed participants to express their thoughts in their own voices. Flat paper transcripts, even interpreted into a coherent narrative, cannot capture the disdain, irony, humor, and cadence of the research informants. The video opens with Harvey, whose pride for what is in his life, as he is describing the photos in his scrapbook, cannot be described in a hard-copy report. The Researchers and the Research This research is written in the interpretive (also called the reflexive) tradition. Etherington (2004) depicted traditional hard-science approaches to research.

6 6 Academic research has traditionally been seen as an impersonal activity: researchers have been expected to approach their studies objectively, and were taught that rigour demanded they adopt a stance of distance and non-involvement and that subjectivity was a contaminant. This God s eye view of the world can seem unchallengeable, expert, hard to connect with, and sometimes, for me, uninteresting to read. Without sight of the person at the heart of the work I feel no relationship with the writer, even if I am interested in the topic. (p. 25) It is important that the research questions and context guide the method. There are times when definitive, quantitative studies, where a margin of error can be determined are essential. For example, in determining which agents are carcinogens, an interpretive study is not appropriate. However, attempting to give a human science study authority through borrowing the practices of natural sciences usually functions only to strip the research of its meaning and draw conclusions that are nothing more than common sense. For example, we do not need a research study to tell us that human beings are happier when they feel loved. This is intuitive. Interpreting what love means to people and what it takes to feel loved is much more meaningful. This research is an example of interpretive research. The PDD Central Alberta Community Board s person centered planning initiative had progressed to the point that people were asking for dialogue. People wanted to have conversations about what they were observing and experiencing, in part to help others learn, in part to shape the initiative, in part to progress further, and in part to think out-loud so that they could shape their own responses to the initiative. When another person mirrors, reflects or paraphrases our words we can notice (sometimes for the first time) what we are really thinking or feeling. Whey they summarize what we have been telling them we might begin to create links between ideas, stories, experiences, and relationships of which we had been hitherto unaware. When others ask us curious questions as they listen to our stories and notice our physical presence, our body language, our inconsistent behaviors (such as laughing when talking of painful issues) this can lead us to reflect more deeply and become more aware of lesser known aspects of our selves. Another person can reflect back to us what they can see, which is often more than we can see ourselves, thus opening us up to less conscious aspects of our selves. (Etherington, 2004, p. 29) This research was grounded in conversation. The first level of conversation was between the interviewer and the interviewees. We did not stick to the interview guides. The interviewees led the conversation where they wanted to take it so that they were welcomed to introduce anything that they thought relevant to person centered planning. As the interviewer, I was present in the interviews. I shared elements of my own life how I plan, and the questions that emerge for me. It is important that as you read this report, you know that I engaged in these conversations and interpreted what I heard within the multi-colored fabric of my life context. I think about planning with the advantage of having a nurturing family of origin, a loving spouse and the experience of motherhood, being a mother to a six-and-a-half year-old daughter and a four-and-a-half year-old son. I interpret services to persons with disabling conditions with over twenty years experience including my early beginning in the adult residence of a large institution to many years spent supporting competitive community employment. I reflect on person

7 7 centered planning with ten years experience as a faculty member at a university, having instructed undergraduate courses in person centered planning for seven of them. The next level of conversation was between the stories of the interviews. Without revealing names, or information that might identify the informants, I shared anecdotes from one interview to another. These served as valuable interview probes that promoted sharing of new and original stories. Numerous research participants commented that they valued the opportunity and the type of dialogue they experienced through the research and that this should be the type of conversation fostered within person centered planning itself. The partner in this research was Brittany Harker Martin. Brittany is an Arts Education Consultant with Cocoon Consulting. She has taught in inclusive classrooms. Her current consulting work includes empirical research, workshop facilitation, bioethics and e-learning. Brittany comes from a large spiritual family. Her father regularly sat each of his children down and had them review their life goals and their action plan to achieving them. Brittany still regularly uses her own version of person centered planning to guide her life and the life of her loving spouse and that of her two daughters (the same ages as my children). Brittany and I playfully spar as she is a planner and I am not. I react to where life leads me. Brittany transcribed all of the interviews and conversed with them, marking them up with comments and questions. After I read the transcripts and Brittany s notes, she and I followed up with lengthy live conversations. Coding, Analysis and Interpretation The interviews were transcribed so that interpretation could be facilitated through the manipulation of both video clips and printed text. The interview transcripts were coded using Emerson, Fretz, and Shaw s (1995) methods of open coding, memoing and reflections. Each text transcript was read-through multiple times line-by-line. Notes were made along the margins identifying content areas and potential themes. Memos were added. Memos identified reflections, questions to pursue, associations with the literature and comparisons and contrasts between respondents. Upon completion of transcript coding, Alvesson and Skőldberg s (2000) quadrireflexive framework grounded the research analysis. This particular approach to reflexive methodology integrates four types of reflection: (a) interaction with empirical material, (b) interpretation, (c) critical interpretation, and (d) discourse analysis. Alvesson and Skőldberg described their particular research approach as being conducted from an emancipatory cognitive interest which critically interprets various empirical phenomena, with the purpose of stimulating self-reflection and overcoming the blockages of established institutions and modes of thought (p. 128). In plain language, this approach to analyzing the information from the sixty interviews means reflecting on each unique story, looking for themes between stories, reading between the lines and taking the context into account to consider what is not being said in addition to what is being said, and examining the specific words that are being used to talk about person centered planning.

8 8 Some definitions of person centered planning in the words of the interviewees There was a broad range of perspectives on person centered planning amongst the stakeholders in central Alberta. Some identified person centered planning as a philosophy and married it conceptually to concepts such as choice, listening and self-advocacy. Others echoed (or rather applauded) O Brien, O Brien and Mount s (1998) question as to whether person centered planning will join the hula hoop in the museum of past fads (p. 26). They defined person centered planning as a document and then usually added that it made little difference and was a waste of time. While there was variation, those most likely to conceptualize person centered planning as a philosophical shift with vast implications on practice models and on outcomes for persons with developmental disabilities were staff persons in administrative positions, particularly those in positions whose job descriptions incorporated responsibilities in the realm of person centered planning since the inception of PDD Central s initiative. Those most likely to see it as a splash in the pan change in document were front-line staff, particularly if they worked for organizations that were not involved in the early stages of the initiative. The following are a representative collection of direct quotes from interviewees in response to a request to define person centered planning. Making time to listen and understand. It s our clients outlook on what they want, what they need, their wishes for the future and how, as staff, we can help them with this. It s a plan for self-advocates so you can get your goals that you want to do. A set of forms printed off from the computer, that we are required to fill out. Just another information gathering tool that we probably wouldn t have used if we didn t have to. Honestly I would say it is extra paperwork. Pearpoint and Forest (1998) wrote, Person-centered planning three wonderful words. No jargon. Very straightforward. The planning is centered on the person. Simple and yet profound. For us that means the planning is not for the convenience of the services. It is simply to serve the hopes, dreams and visions of the focus person. It is very exciting work. (p. 93) It is essential to remember that because each of the three words have immediately recognizable meaning to us does not mean that the work of helping people to identify and strive for their dreams, to change their lives that have been entrenched in a service system and themselves in a client role, is easy work. Kendrick (2003) wrote, Person centered planning methodologies neither undertake the long-term labor of life-building itself, nor do they assure that others will do what is needed in this regard. It can help encourage such commitments at a point in time, but a stimulus is not a response. Without people willing to live the dream, the dream will wither. (p. 7)

9 9 Success Stories It is important that we share success stories early on in this research report. There were many. It must not be forgotten that the PDD Central Alberta Community Board undertook an important, unique and commendable initiative in supporting person centered planning region wide. This is rare. We were unable to find any published accounts of such practices in the literature and heard tell of only two states that had undertaken similar initiatives through our presentation at the TASH conference. In our efforts to evaluate, to strive, to grow, to improve, it must be remembered that credit is deserved for the undertaking. While person-centered planning makes only a modest difference to community building compared with policies that sink billions of dollars into programs that segregate and control people with disabilities, we think it s worth while for personcentered planners to make this modest difference: both for the real benefits to the people involved and for the lessons their experience can teach whatever policy makers have ears to hear them. (O Brien & O Brien, 1998, p. 70) The first success story is one of a woman with numerous socially valued roles in the community. At the time of interviewing, she was living in a bachelor suite apartment and was upgrading at college for her highschool equivalency diploma. She regularly exercised at a community women s fitness facility and used the Internet at the public library. She was a volunteer school educator and advocate for social causes such as raising awareness of the epidemic of drinking and driving. Asked to recollect her life in 2000 (prior to the inception of person centered planning in her community), she described herself as living with her mother, attending a day program for adults with developmental disabilities and doing volunteer work she described as boring. When asked whether she felt that person centered planning had anything to do with the changes in her life she replied, yes, the old way, if I wanted anything changed, it took longer. Now it is adapted to my needs and wants. As I change, the plan changes. I can call the shots. The second success story is about a young entrepreneur whose personal connections through engaging in person centered planning led him to begin a worm composting business. His story is notable in that many people (often within the current research interviews) argue that person centered planning does not work for people who are nonverbal. This young man s communication skills are very limited and he has repetitive behaviors and vocalizations. The other thing is that [our son] has a very full life. A very full day. A typical day is quite full and he exercises, swims, downhill skis - something we never would have done. He likes it and does very well at it. But we wanted to have more than just exercises and sports. We wanted some meaningful volunteerism, meaningful activities. Person centered planning has been the key to that. Because we took the time, you have to take the time to look at the person and look at what they can do rather than what they can t. And that was the key for us. The person centered planning initiative has had a positive impact, not only on persons with disabling conditions, but also on the career satisfaction of personnel. A long-term Executive Director said,

10 10 I ve never reached a point where I ve burnt out, but this just regenerated me with so much excitement, that I couldn t wait for one day to turn to the next. And selfadvocates took on a meaningful role. They were key players. One of the interviewees whose paid position puts her in constant interaction with self-advocates was asked how persons receiving supports overall are feeling about person centered planning. She replied, They like it. They really, really like it. I think for a lot of them, I don t think anyone ever said this to me, but it is safe to summarize and say that many have never been asked what is your dream in life. Where do you see yourself going? What do you see yourself doing? Either they ve not really been asked, or the question is framed so narrowly into a particular this, that they never thought about it, or they kept it to themselves. So lots of them are excited to be asked, what do you want to do with your life and how can I help you do that. Some of the individuals that I know and have seen go through PCP have gone from just living a life to rocketing off to their life, which is fabulous! For others, because they ve not been asked or it s been so narrowly presented, they don t even know how to have a vision of their life. There s that way of looking at your life. The success stories shared above are all big. One person moved away from her parents into her own apartment and moved on to college. Another person became an entrepreneur. Even the global quote talked about lives rocketing. However, it is important to remember that sometimes the greatest successes are little. As is discussed below, it is important not to misinform people that they must make a largescale change to their lives in order to participate in planning. Planning to have an ordinary life is important. Planning to maintain a good life that has been achieved is also important. I find that, even myself, I always tend to want to give the examples of big grandeur, but some of the other ones are just as monumental even though they may be less valued or lesser of a change. Those are crucial. You don t always need the big limelight. You know, somebody just actually having the courage to get up on their own and choose something on their own is monumental for many individuals. An important quote from one of the research participants will be used to close the section on Success Stories. Person centered planning will be most successful when people in paid positions are clear about their roles and how they can use such methods and tools to the advantage of persons with disabling conditions. Smull (1998) wrote, the overriding principle is that a plan is not an outcome, the life that the person wants is the outcome. The only acceptable reason to plan is to help someone move toward the life that they desire (p. 27). People [in paid positions], if they were better clarified, that they would be able to take that role of gaining power by giving people power. It s my perception that some of those people aren t sure what their roles are because traditionally there are things they were responsible for that now with PCP the person is more in control of. They should be using their job to give power. Staff have a lot of power and ability to make that happen. One of the issues is that if people have

11 11 been in service for a long time and they live independently and they like their life just the way it is and they don t want anything to change they don t want to mess with anything, the support people will say, Well, I can t do PCP because they don t want any changes. They don t want to grow. They don t want to improve. And then, you say, Well, that s not the purpose of PCP to make them change or do different things in their life. Part of that process would be in identifying what it is in their life that they like and what they don t want to change and supporting them to make sure that it doesn t change. And it s still a PCP process it doesn t have to be all about change. Dreams and Goals An Authentic Dream must: be meaningful to you be consistent with your values resonate with who you are and how you see yourself be owned by you give you a direction for your future and occupy a significant place in your life be motivated by interest and curiosity be realistic or within the realm of possibility be accompanied by a feeling of fulfillment and satisfaction bring you joy Gottlieb & Rosenswig (2005) p. 38 Gottlieb and Rosenswig (2005) distinguish between a dream and a goal. In our book, dreams are attainable. They are more possible than fantasy and broader than a goal. We deliberately use the word dreams rather than goals or aspirations because dreams speak to your vision of who you are and what you might do. We prefer the word dream because it allows you to be more expansive and open to imagination and invention. The broader your definition, the greater the possibilities of expression. For example, a goal might be to become vice-president of your company, but a dream might be to become a leader. The dream can be expressed in a variety of ways: in your job, through participation on boards, or even through political leadership or community leadership. (p. 19 & 20) Within this research, some of the interviewees recognized the important distinction between dreams and goals. One of the administrative staff explained, we need to define the difference between identifying a dream and a goal that the dream can be this fantastic thing, but a goal has to be something that s attainable now. The dream doesn t have to be something met in a year, but it is a lifelong journey toward that. For instance, one of the service providers talked about parents expressing that a dream is not even close to being possible and the professional reassurance, It s okay. Let s think what the most important things are that come out of this initiative. She insightfully reflected that the most important work that she has done has not been in producing dream outcomes, but in facilitating the process. The planning process and elaborating on the dreams they

12 12 have and finding out how to make that dream work for that person and get what they actually want. Another staff person expressed, The dream doesn t have to be attainable. It s their dream. The whole point is the journey. A person might dream to be an airline pilot, but maybe they just want to experience flying. If we can make that element of their dream come to pass that s something. That s a real, tangible experience that they otherwise might not have had the courage to say, You know, I really want to do this. The Four Communities Each of the four communities we visited in the central region had made strides in successful implementation of person centered planning as presented in the literature. At the beginning of each community section, these successes are listed. The successes listed after the line (and solely for the first community), are those that are unique to this community. The successes listed before the line, are those that are shared by the preceding communities. Wainwright Listening to people over an entire year rather than focusing on them through one single meeting. Changing the focus from needs to gifts and abilities. Shifting the emphasis from programs and skill development to being and quality lives. Freeing people from the chains of clienthood. The first pair of interviewees that are featured in this research are a mother and son who came in to participate together. The son is in services for persons with developmental disabilities. He lives in his own apartment with supports and attends a day program where he does paper shredding, recycling and janitorial work. He was articulate about his supports, his daily activities and his hobbies, but although he has been in services with two different organizations funded through PDD, no amount of probing brought salience to the concept of person centered planning. Specifically, I began by asking, Have you been involved in person centered planning? Does that sound familiar? No response. In PCP? No response. Have you done a TAP? This produced a monosyllabic, Yeah. And recently, have they changed the way they did it? Pause. No response. Did they ask you different kinds of questions? Like, what are you interested in? Who do you like to spend time with? What are your dreams and visions? He answered that he really was not sure. His mother s interjected comment supported the interpretation of the son s uncertainty they were going to do all of those things, but none of it happened because one of the goals was to learn to be more independent in the community. She explained that many of the supports that she felt would have helped her son progress in his journey toward achievement of his dreams and visions were interpreted as inappropriate by staff groomed in a western culture that values independence and self-reliance. She explained

13 13 that the organizations used the rhetoric of person-centeredness and inclusion. She explained that reading the brochures while still in children s services, she interpreted this to mean that her son s particular gifts and needs would be considered and that services and supports would be designed specifically for him. She assumed that they would get to know him, plan for him and with him, and follow-through on those plans. Further, she assumed that he would be competitively employed in the community, just as (when categorized as a child ) he attended school in his neighborhood with his same-age peers. She was disappointed on all accounts. The staff had no training with regard to her son s particular needs and sought none to become person-centered. They slotted him into preexisting services rather than designing supports specialized for him. He was disintegrated and spends all of his time with other people with disabilities and occupied in mundane, repetitive, time-filling tasks. She reported that staff persons do not seem to read nor follow the plan. Some just do everything for him and not allow him to do anything. The next featured interviewee is also an individual receiving supports. He attends a traditional day program that he calls the shop. He says that it is boring. He says that when he has a disagreement with his mom, the staff sides with her and so he is not sure that he wants his family to attend planning because they will take over my problems and overrule me. He said that the PCP process is an improvement over previous planning methods because he writes the plan himself. He would prefer if it was videotaped rather than entirely written, but he said that the agency cannot find their video camera. His next planning meeting is scheduled and he cannot change the schedule because it has to be on a certain date. When asked about whether his goals were being addressed by his service provider he replied, Yeah, they stick up for me and if I have a problem with something I tell Jane [names have been changed to ensure confidentiality] about it and Jane tells John and John goes to Jill about it and Jill tells the other agency. At this point, I asked whether he has a copy of his plan. He replied, I asked and I asked again and they said I have to wait until April now. The next interviewee is an unpaid support. The family member she supports lives in her own apartment and has a number of cleaning jobs contracted through one of the local agencies. She is paid a wage through the agency. She enjoys bowling for recreation. She maintains that she is happy and does not want to change anything about her life. When I asked the interviewee whether she has heard of person centered planning or PCP she replied, No I haven t. When probed further, she said that she does participate in reviews every three or four months. She was unaware that anything had changed with respect to the philosophy of the planning or the supports offered to persons receiving services. A great deal of interview probing elicited, they ve changed all her forms at the shop. The interviewee did not know why this was the case and it had seemed to minimally impact the planning process in that they now asked do you want this? and do you want changes? (to which her family member continued to reply no ). There were no changes to the supports procured to her family member. The reviews are attended by the interviewee, the family member she supports, a representative from PDD, and four or five agency staff personnel. When asked what she likes about these reviews, she replied, I like the fact that it puts me in touch with what they re doing at [the agency] there what they expect from her and what problems she had with that. In other words, her perception is that the reviews are agency and program focused. When asked

14 14 what she would change about the reviews, she replied, nothing really, other than they said they could go further apart. When asked whether the focus person has a copy of her own plan, the interviewee replied, I don t think so, no. When asked whether she thought it would be advantageous, she replied, she s just as happy if they have all that paperwork that she doesn t have to worry about it. She ll phone and say, that form came again. I tell her to fill it out and don t sweat it. Another interviewee, an administrative staff person, explained how they have interpreted person centered philosophy and used this not only to reorganize their planning processes, but to become a person centered organization. She explained that putting the person at the center of the process determines how they conceptualize the types of supports that they will create for persons with disabling conditions and how they will match individuals requiring supports with their paid personnel. When we look at PCP, we look at what types of activity the person is looking at and what they want. And we get the person involved as well. Otherwise, it s us doing and we want it to be a collaborative effort. So once we ve decided where a person would like to go, then we look at the supports and we use it s not necessarily a key worker who is looking after that. We look at people with gifts and abilities and we match them with the gifts and abilities and our support staff. And then our support staff are instrumental too in getting out in the community and searching things out. We ve sort of combined certain talents and combined or put people together with the same talents and abilities. The process that she describes is to use the means explored through the person centered planning initiative such as how you can hear me to explore the individual s gifts, abilities and interests and match him to staff persons who have similar interests or the potential to facilitate community connections in the appropriate domain. She enthusiastically described community connections and thereby meaningful relationships that had derived from this person centered model of supports. I think we ve seen a real shift in [that] our programs [have] become more community based. So instead of focusing on having all sorts of programs in-house, we look to see what s available in the community. So, it this person has an interest in ceramics, well, why would they not go to the [local community] ceramics shop? There was one gal who was interested in scrapbooking so she joined into [community] scrapbooking classes. And at first she was a little anxious about going on her own, but once she felt comfortable, now she s walking there to the skills classes on her own. She s developed that independence. She s spawned friendships with some of the people who also take the classes. So it s so much more natural, in my mind. And work, traditionally in job placement, it would always be based on janitorial work, the traditional job out there. We seek to use community connections because a manager/owner of a place is actually a member of her church. So we had that church connection and we built on that community connection. Okay. They know each other from the church. Let s transfer that and see if there s possibility to make it work in an employer/employee situation. And it s worked out pretty well. They did a work experience and now he s being paid. So he s progressed. And the other really neat thing about it is, was that the regional supervisor was out and they come and check how stuff is here, and he was so impressed because this fellow is one of the best

15 15 people they ve seen. You know? He was busy and he greeted people and this is a wonderful experience. So he [the regional supervisor] was saying to other people, you know you really should consider hiring someone with a disability to come work in your workplace because it adds a new dimension. So that was a real highlight for me. I thought it was great! It is important to recognize that these comments come from a person holding an administrative position in one of the organizations. She shared a comprehensively conceptualized and well-articulated philosophy and model of person centered planning and supports. However, there were direct contradictions between her statements and what was expressed by both persons holding front-line staff positions and persons receiving services. There were three such contradictions. First, in the quote above, she described matching person requesting supports with paid personnel according to interests, abilities and community connections rather than traditional key worker protocol. Some of the front-line staff, on the other hand, described very traditional obligations and scheduling routines determined by key-worker assignments. Second, she stated revising the person centered planning document because it had become too paper oriented and even then using it only as a guide or a framework, picking and choosing between questions and not using it at all when it was not appropriate to the person or the context. It s not something we rely on all the time. It s used as a framework. Sometimes we use just photos and activities of things they did when they were younger. We had one gal and we said, So how about try this one out? and she wasn t interested in it, and that s fine. Sometimes you take parts of the document because there are some people who don t want to talk about parts. This conceptualization had not been clearly communicated to some of the personnel working in front-line positions who were completing the document chronologically, question by question one-on-one in key-worker/client relationships. This is despite comments of finding questions repetitive, information redundant, and the people they were supporting bored or frustrated by the experience. The important distinction in this regard was that the interviewee in the administrative position saw person centered planning as having positive outcomes for persons with developmental disabilities, whereas some of the interviewees in front-line positions saw it as a document functioning for agency purposes. Third, while the administrative staff person perceives that the process is much more relaxed and even enjoyable for individuals receiving agency supports, persons in supports themselves noted little change, and front-line staff described the process as largely the same with a new name. The most poignant example was that the administrative interviewee asked, Can you imagine? that one of the persons with developmental disabilities used to have to take a doctor prescribed nerve pill to relax herself prior to the traditional planning meetings. She went on to say how happy she was that processes had changed for the better. Later in the research day, one of the interviewees, an individual with developmental disabilities receiving services, was asked how she felt about person centered planning. She said that she took a doctor prescribed nerve pill to relax herself prior to the planning meetings. Despite the administrator s hopes, calling the meetings person centered had not changed anything, at least not enough to soothe this individual without medication. The next featured interviewee is an example of one of the front-line personnel with contrasting perspectives on person centered planning to those expressed by the interviewee above. She works as a front-line worker in a group-home. She has been

16 16 working there for a number of years and states that little has changed over that time because they love routine. According to the interviewee, their favorite thing to do is going for coffee. We also make sure we plan our one-on-one outings. Everybody has a turn at a one-on-one outing. When asked what they do for the one-on-one outings, she replied, usually it is going out for coffee. She stated emphatically, I love my job. When asked whether she thinks that person centered planning will join the hula hoop in passing fads, or whether it is a long lasting, far-reaching change to the way things are done in PDD funded agencies, she replied, they ll change it again. I m sure they will. Because a lot of the paper works change. Nothing stays the same. It changes. Which is fine. I mean they re only trying to make it easier for the client. She characterizes person centered planning as a lengthy, repetitive set of forms that are required to be completed. With the individuals for whom she is a key-worker, she sits down one-onone for sessions as long as the individuals can tolerate and completes the questions one by one in chronological order. A PCP interview is then conducted. It is the same format as the former TAP planning meetings with a new name. It is attended by the client and a number of administrative and front-line staff from the various organizations that he or she attends. He or she chooses which agency hosts the planning meeting. When asked to describe what the planning meeting looks like, she replied, everybody sitting around the table talking about the client and what his goals are and what he wants to do or what he wants to see. When asked to what degree clients participate, she replied, The ones I deal with they put their input. And I have one or two that [say], Oh, whatever you think. When asked whether it is an intimidating process for them, she replied, for the one, I think so, because he is nervous around people. When asked whether she uses the plan to guide the supports she provides to people, she replied, I m in the binder every day, almost every day. Further probing such as, looking specifically at the plan? revealed programmatic pursuits such as, No, it s more of, like his last medical appointment when they were they re written on there, when his last one was when he s due again. The next interviewee was also employed in a front-line position, but was much more positive about person centered planning. Her interview was very informative, as she had a great number of insights regarding person centered planning and the implications. When asked how she defines person centered planning, she replied, it is just to give them, the individuals, the chance to have choice on everything that they do, and what they want out of life. Like, try to listen to them to figure out what they want. This interviewee s comments resonate with Smull s (1998) linking of person centered planning with choice. Choice, as it is being used in current disability discussions, appears to have three related concepts embedded in it preferences, opportunities, and control. Preferences include not only what someone likes but also their desires and dreams. Preferences include: who people want to spend time with; what to do during that time; and where to spend their time. Opportunities are the available array of: people to spend time with; things to do during that time; and places to spend that time. Opportunities should also include being able to spend time by yourself. Preferences reflect what people want while opportunities reflect what is available.

17 17 Control is the authority to make us of an opportunity to satisfy a preference. (p. 37) The interviewee s operationalized definition of choice is much more constrained. She is employed by a day program. She provided the examples of observing people (for preferences ) to see if they go to the recycling or the woodworking departments, or whether they search Websites or chat through . The interviewee expressed that person centered planning was a vast improvement over traditional planning approaches. Mount (1998) described the problems with traditional planning approaches. The underlying values of traditional planning communicate subtle messages, for example: The person is the problem and should be fixed but never will be. Learning to adapt to impossible situations is expected; the more a person protests, the more of a problem he or she is. Professionals know best, and the person must stay in segregated programs until he or she is ready for community. These messages undermine people s confidence and growth. (p. 56) The interviewee described PCP as a process that contrasted markedly from traditional planning in that: a) it is not necessarily conducted in a meeting format, I think they re trying to break from the usual way. Do they really want it as a meeting? Would they rather do it in a scrapbook form, or would they want to do it on a video-tape? Do they want to even hold that meeting at our shop or do they want to do that in their home environment? b) the meaning is more important than the document, How do you get from the paper-trail with the checks in place, but let it be more spontaneous and it is really what they want? Not promoted by anybody but that person? It is just too easy for it to be promoted by someone else. She explained that by offering a list of choices staff usually influence people s responses. c) observations and the resultant plan are informed over an entire year rather than formulated in a single meeting or event. We try to keep notes from one year to the next year. So it s over that whole year, you re kind of compiling notes. For me, lots of time, I ll carry a little notebook with me, I take my pen and write it down, and then I transfer it over so that I know that, OK. This is something they expressed at this time. We ll just kinda wait and see you know, we ll talk about is some more if they decide they really, that one seems to be a common thing that comes up whenever we hit that certain environment. Then, yeah, it probably is something that is of interest to them. When you go to write the PCP, then you maybe can bring things up. Have you really thought about this some more? Is that still a consideration? Or is that actually what you want out of that or is it maybe something another part of that you want? And use that as your basis to work on your PCP.

18 18 The interviewee perceived that person centered planning has played a role in making self-advocates aware of their rights. She commented, they have changed, they know that they have rights, and there are some that are very, very vocal about the fact you cannot tell me to do that, or you can t do this because this is against my rights. They know that now. However, she said that this has not come without its costs. I think the downfall is that they don t always know the consequences. Like if you don t do the job, or whatever, they don t know the realization that you get fired. If you behave badly, or whatever, people don t want to accept you the same. To this interviewee, positive implementation of person centered planning and accountability seem to be contra-indicated. There seems to be confusion as to what documentation is required. I think they re trying to get it so that, it s almost like friends meeting friends - sitting, chatting, in whatever environment, but then again, you still have a certain amount of stuff that has to be on paper for the government purposes and whatever. And I think there s a little bit of difficulty trying to decide well, how much of that do I actually have to have in the actual paperwork? That says, that is what s going to go in. She believes that human services located in a small community context has its pros and cons with regard to planning and implementation We have too much of the same kind of thing. Not enough variety for example, for somebody who said they wanted to be involved with airplanes. We only have a small airport here. Well, maybe it s just going and watching them. It s not quite the same as if you were in the city and going and watching the big airplanes land, you know, in a big airport and big aircrafts coming down for them to see. It s not the same here as it would be in the city. Which has its pros too. If you go hang out at the trestle long enough, you get to know the small community that s there. Probably a little more willingness and that to get to know a small area and that. There are a number of aphorisms that are appropriate here. You don t need big communities for big ideas. Watching airplanes doesn t get your feet off the ground. They have worms and paper punch-outs in both rural and urban settings. This final statement refers to the success story about the young entrepreneur shared in the early pages of this report. This young man s obsession with the dots that came from paper punches became the avenue for a business and numerous personal relationships. He did not need to live in a large city to make this happen. When asked whether person centered planning had made a big difference to her agency s way of doing business, the interviewee replied No, they tried to make it gradual and we re working out kinks within the system. She elaborated that she felt frustrated and somewhat threatened and fearful in that she did not know concretely what was expected. The expectations appeared to be high in terms of the outcomes for the people that were being supported, but the terrain in terms of how to proceed was continually moving. We should not be too quick to interpret this discomfort as a negative sign. I have been taught that before we can learn, we must teach ourselves to cope with ambiguity.

19 19 The final interviewee to reflect on the stage of development of person centered planning in Wainwright is employed as a front-line worker in a four-person group-home. She reports being very happy with person centered planning. The process starts with a poster that is hung in the individuals bedroom and is then transferred verbally onto the document. The family is not involved; it is completed between the individual and his or her key-worker. The person does not have a copy and the interviewee does not see the sense in them having one, as none of the people living in the group home read. I don t want to be there just to make sure everyone has a shower and three square meals. I want to be able to help them attain the things they want for themselves just like we can do on our own. You want to know their passions, dreams and goals, and you might think that s just silliness, but it s bigger than that. If someone s goal is to be an astronaut that means to me he really has a love of space or machines or love of the stars. Well how else can we facilitate this passion for space? It s more than the actual goal itself that is set up there. It s all the other things that it implies. Wetaskiwin Listening to people over an entire year rather than focusing on them through one single meeting. Changing the focus from needs to gifts and abilities. Shifting the emphasis from programs and skill development to being and quality lives. Freeing people from the chains of clienthood. Allowing people choice of where, how, when and with whom they plan. Reducing the amount of process and paper involved in planning. Building some relationships with the community. The first interviewee that is featured for this community lives in a group home with several men and has lived there for many years. He introduced himself by saying that he lives in a group home and mostly I like to watch TV. He attends a day program and said that he takes different classes like sewing, computer, wood working and beauty culture. When asked whether he would change anything about his staff, he replied, Well, yeah, if the staff doesn t understand everything. If you tell them you don t want to go grocery shopping or do anything else then they have to write everything down and it goes back to the supervisor or team leader. When asked whether his group home feels like a home, he replied, yeah, because it s mostly safe for me for all the guys so the staff in there, they don t want anything to happen to us. Home usually connotes feelings of warmth, coziness, comfort, family, and fun, rather than safety, which may be symptomatic of other aspects of a service orientation. For example, when I asked him whether he feels like he gets to be independent, he replied, yes, they have a chart for us, for all of us, and we have to follow our chores, the way it is. When asked to define person centered planning, he said, Well, it s about yourself and how you do your planning stuff. What you want to learn and your goals and what you

20 20 want to do in your goal and your future and everything, and sometime you can ask who you want to ask for help and all that stuff. When asked whether planning is a positive experience for him, he said, They re okay, but a little scary because you don t know if they re going to talk bad or good about you. The interviewee presented the planning process as a meeting dominated by staff. For example, his was held at his day program and the people I had was my team leader from my group home, my key worker that does all my typing on the computer, and then I have [another staff person] and my supervisor from [the day program] and then the staff, one of the workers at the office plus [the PDD representative]. When probed, he also agreed that his Mom had attended as well. His recollection of the planning session was largely as sorting out a misunderstanding and what he needed to do in order to right the situation. His summative statement regarding the planning meeting, or in other words, his suit of armor for the occasion is I don t say anything until they ask me how I feel about it. The second interviewee described here was presented within the success stories in the early pages of this report. She maintains numerous socially valued roles in the community. She is currently upgrading at college for her high school equivalency diploma. She has won several medals through Special Olympics and regularly works-out at the local Curves for Women fitness facility. She attends a social club for adults with special needs. She is a school educator and vocal advocate for social causes such as against drinking and driving. She lives in her own bachelor suite apartment. Asked to recollect her life in 2000, she described herself as living with her mother, attending a day program and doing volunteer work she described as boring. When asked whether she felt that person centered planning had anything to do with the changes in her life she replied, yes, the old way, if I wanted anything changed, it took longer. Now it is adapted to my needs and wants. As I change, the plan changes. I can call the shots. Her concern is that planning continues to be a paper process. She has heard that it may become possible to plan using video footage and she feels that this would be advantageous. She would like to take a video camera along to all of her community pursuits, such as to college, and to her fitness facility to document what her life is like now, and to record dreams for the future. The next pair of interviewees were a delightful combination as they illustrated the bond that form between family and paid professionals when both truly care about the well-being of an individual. A mother and a staff person came together to talk about the son s experience with person centered planning. While very pleased with services and supports, they were not satisfied with the person centered planning process. They described it as a mandatory paper document process that is time-consuming, time-wasting and challenging with people who are low functioning and non-verbal. They agreed that it could be useful with people new to services, but not with people who had been in services for any length of time, such as the man they were using as an example. I asked whether using multimedia tools such as a video camera might solve some of their concerns. They adamantly agreed that it would not. I wouldn t enjoy being followed around by someone with a camera and would hate not being able to tell them to go away. The next interviewee was a mid-level administrative staff person. When asked to define person centered planning, she said, It s more a focus on the client. What they

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